Month: September 2010

I had a patient named Joe. We were introduced back in May. An incredible bond instantly formed although he had the end stages of dementia. Every time Hadley, my service dog, and I visited him; his spirits were visibly lifted for a long period of time.

Joe was a police officer, so he generally had a rough attitude and demeanor. In fact, his daughter paid for him to have his room all to himself, when such a room normally housed two people. Joe earned a Medal of Valor in the 1960’s for putting his own life in jeopardy while convincing an armed bank robber to surrender.

When my hospice supervisor and I first went to see him, she said she didn’t know if it was going to work because he was, supposedly, one of the bitterest people in the home. As Hadley and I visited, my supervisor told me the staff at the facility reported to her that Joe was becoming less and less combative with staff and more cooperative with them.

Our connection was so obvious. I got to know Joe’s daughter too. She and I would sometimes visit him together. On some visits, he seemed very connected and talked directly to me for brief moments. I remember one incident when I told him to wipe his mouth. He repeated, “Wipe your mouth! Sometimes a woman knows a man better than he knows himself.” But on other visits, as expected with someone who has dementia, he was less cognitive and responsive.

Joe and his daughter were estranged. In fact, she took over and handled his care after his cousin died. When Joe and his wife were married, they adopted the daughter. When she was ten years old, her parents divorced, and Joe did not have much of a part in her life. On her end, he was very verbally abusive to her and her children and the children refused to visit him. She wasn’t ever invited to his house and when I asked her what Joe liked to do for fun she said, “I honestly don’t know much. I don’t know my dad at all.” She had it even more rough because her mom died a year ago in August and one month later, her son committed suicide. When a person has so much going on in their life we consider them a high risk client, meaning in the case of Joe’s daughter we needed to provide a lot of bereavement support.

Shortly after I introduced myself to her, she called me frequently and wanted to meet often to visit Joe together, so we could talk about what was bothering her on the ride there. It was awesome that she felt comfortable enough with me to call me for so much support. She admitted in the beginning that she resented me, when she found out how close her dad was to me. She was jealous that they never had that level of closeness that I established with her dad in such a short time. But she said after a while she began to love what I did, and she wanted to see her dad happy no matter what.

She found it hard to visit him and often asked me to accompany her. She would tell him she loved him and he would say, “Oh, you do not!” We tried to explain to her that it was all a part of his dementia, that he was in another world, and perhaps in that world, she didn’t exist. We didn’t say it so brutally; we used more positive and healing language. When I would go with her, he would ignore her and his full attention would be on me, telling me what a wonderful person I was and how much he loved me. Although I couldn’t control this, you can imagine how awkward it was for him to be telling me this when his daughter was right there wanting that same attention I was already receiving. He would say things to me like, “You’re such a wonderful person! You got it and I love it!”

He would do things that wouldn’t normally be considered affectionate, but for someone who has dementia, they were seen as a way of reaching out. He liked to take paper towels and wipe my arm. When I went to visit him, I would bring him a chocolate shake and an orange soda, his two favorite drinks. We would watch Animal Planet together while he petted and talked to Hadley and talked to me too. When Animal Planet was on, he was like a kid at Christmas, and commented on everything. He had his own language and made up words to the extent that I often didn’t know what he was saying, but I could tell when it was phrased into a question and I would make up an answer. From there, we had a conversation in his world.

Early last week, my supervisor called to tell me that there was a major decline in his health that they were giving him medication for pain and he was restricted to bed-rest care. So I thought about visiting him this weekend. This was on Wednesday. I called again on Thursday and she said he was doing fine. Then about 10 minutes later, she called me back and she had gotten a call from his nurse saying he wasn’t doing well at all and they were starting him on a high intensity pain medicine. So I decided it would be in my best interest to get a dial-a-ride and get down there as soon as possible. I had called Call-a-Ride that morning to try and go and they said they had nothing. But I decided to call and tell them it was urgent that I get there, and luckily the lady got me one. So I got down there and his daughter was there as well as the massage therapist. She had just finished massaging Joe and was working on his daughter.

As soon as we entered the room, Hadley started acting really strange! It wasn’t like she does when she’s excited to see someone; it was a weird, different way, like she knew something was up. Joe’s daughter also noticed this and said she looked visibly upset, like something was wrong, and Joe’s daughter kept saying, “I think she knows.” So they informed me there was a chair beside Joe’s bed available. I sat down and told Hadley to lie down. As much as I told her to lie down, giving the silent cue for her to do so that I was taught in guide dog school, she wouldn’t do it. She didn’t act crazy, but she just stood there. I scooted my chair up closer to Joe’s bed, and Hadley kept wedging herself between me and the bed. Finally, she licked his hand. And as soon as she did that, she lay down right away and obeyed what I told her to do. For the rest of that time, she was content to lie down after she touched his hand. I guess it was her way of insisting that he know she was there. Joe’s daughter and the massage therapist witnessed this, and they agreed. They said as soon as she touched Joe’s hand, he smiled and there was a nice expression all across his face.

After her massage, Joe’s daughter asked me if she could have some time with Hadley, if I would let her take Hadley from me for a few minutes and play with her. I of course agreed. They stayed in the room, but she sat and petted Hadley for a while.

Joe’s daughter decided that since the massage therapist and I were there with Joe, she wanted to take that time to step out, get a change of scenery and get something to eat.

When she left, the massage therapist told me that when I came in and held Joe’s hand, and when he heard my voice, all of the signs on his monitor began to change almost immediately. She said that before he was having labored breathing and struggling to breathe, but when I came in and held his hand, his breathing became steady and even. Rather than looking like he was having a hard time, his body became peaceful and almost angelic, and the pink returned to his face. Later, during the visit, his nurse said he couldn’t believe the pink returned to his face. The massage therapist commented that as much as Joe’s daughter held his hand and comforted him, and as much as she herself massaged him and tried to comfort him, he never looked as angelic and peaceful and his monitor never changed like that until I talked to him and held his hand. He squeezed and pulled my hand so hard, and even when I thought about withdrawing my hand to take a break from holding hands, he squeezed it and pulled it to him that much harder and tighter. He kept squirming and scooting closer to me, on his side of the bed where I was sitting in the chair.

I stayed with Joe for about 5 hours. I asked his daughter if it w
as okay to be there for that amount of time, as call-a-ride couldn’t come back and get me until that time, and I wanted to spend that time with him anyway. She loved that we were there.

When his daughter left, so did the massage therapist to chart some things and make some calls. That was the most wonderful gift they could have given me, that last time alone with Joe. I’m not very good about expressing myself or pouring my heart out when others are around. I was afraid that if I said something really deep and meaningful to Joe when she and the massage therapist were there, that I would have a meltdown, and I am extremely uncomfortable with crying in front of anyone, even my family. But even though we were alone, I still didn’t. I was a lot stronger than I thought. I spent that time alone with Joe telling him how much joy he brought to my life, and how much better my life was because I got to know him and because he was in it. I told him that he should feel accomplished for all he’s done in his life and proud of his accomplishments, and to feel good about himself as a person. The Chaplin was there and prayed with him before I got there, so I decided to pray with him too. One thing that worried me was that his daughter said he relayed to her that he didn’t think he would go to Heaven because he was such a bad person. He told her a year ago she would go to Heaven. But that he was afraid to die because he knew how bad he had been and he was scared he wouldn’t go to Heaven. So I kept emphasizing to him not to be afraid, that it was going to be okay. As I said this, he just kept squeezing my hand and moving closer to the side of the bed I was on.

Joe wore a hearing aid because he was hard of hearing. One thing we learned in Vigil volunteer training is that when someone is in the dying process, their hearing and level of alertness are both intensified. So when someone is lying there, incoherent, and you think since they are ready to die, they can’t hear you or understand you that are totally wrong! Even people, who were deaf in their lives, gain their ability to hear shortly before they die.They are also more alert on a certain level more than they were in their normal, everyday lives. So they hear and understand every word you say, there is hard evidence of this.

My words are an underestimate of how incredible and moving the whole visit was. Here is part of an email I got from his daughter:

“Hello Chasity, I truly believe you were sent by an angel for my Dad. He needed you and Hadley to fulfill something he needed on this earth. And, it sounds like you needed him for something within you. I am really glad you were there yesterday also. And, it was so touching to see Hadley’s reaction to both Dad and me. It just confirms for me the divine connection we have with some in the physical world. I was also very grateful I was there with him when he passed. It was so peaceful. I couldn’t really tell he had moved on for a little while. Everything played out the way it was suppose to. I feel that Dad and my relation are healed and that we are at total peace with each other. I think we needed all the pieces that occurred to make that happen. I hope we will still keep in contact or meet up at Hospice events etc. You are a remarkable woman and I am so grateful you were sent into our lives.”

That was very touching that his daughter said that. Joe passed about 6 hours after I left.

All of Joe’s services will be on Tuesday. When my supervisor called me, I asked if hospice was allowed to go, and she said of course, anyone could go. Joe’s daughter ended up emailing me later with the info. I’m glad that I will be able to attend his funeral. I feel like funerals bring somewhat of a closure to things.

That experience was so touching and uplifting beyond description. Out of all the patients I have had in the almost two years that I have been a hospice volunteer, Joe and his daughter are the ones to whom I was the very closest. They were rare connections. I will miss Joe deeply.

Editor’s Note: The Social Review morns the passing of Ms. Jackson’s client Joe. While such a bond is not usually encouraged between a Hospice volunteer and a client to protect the volunteer from emotional distress, we present this story to educate the public on the importance of involvement in a person’s life at the end stages.